At a CROSSROADS. (31 years of age)

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Chuck C said:
I want to share with you what worked for me:
1. Look forward with great anticipation to getting on with it and waking up in the recovery room. You will wake up in the recovery room.
2. Don't think about the details of the surgery. You are in the hands of gifted individuals who know what they are doing- you will be asleep as they do their magic.
3. Embrace your recovery with joy, expecting to feel a little better each day. Be excited about small victories, like getting your catheter out, or being able to get up and walk a few steps.
4. The days will pass quickly. Personally, I tried to stay ahead of the pain with pain killers. I know that some believe that the possible constipation is worth laying low on the pain killers. This was not my experience. Staying ahead of the pain made my recovery very bearable, and the constipation has many solutions- was never an issue at all for me. You may need to be a little assertive in asking for the heavy narcotics, if you feel that you need them. Having a PCA (patient controlled administration) was a game changer for me during days 2 and 3 in recovery, then it was not needed anymore.

Looking forward to hearing about your successful recovery!
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Thanks Chuck. I have enjoyed reading about your recovery and your journey thus far.
Mind set is a very important factor going into any tough and demanding situation.
 
Wow Mean, a tough start for you, most of it before recall i expect.
good luck to you moving forward. A mech valve does sound like your best option at a young 31 years hopefully be done with And heres hoping your wait time is not too long.
 
Luckyguy17 said:
Wow Mean, a tough start for you, most of it before recall i expect.
good luck to you moving forward. A mech valve does sound like your best option at a young 31 years hopefully be done with And heres hoping your wait time is not too long.
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Thanks @Luckyguy17
Yea most of it before i would conciously remember but the subconsious is another story.

The wait is tough as for my symptoms are quiet strong. I know others do not get symptoms even with severe stenosis but for me its like my body is giving me warning signs so i am thankful for that..
 
I had my pre admission yesterday. Was a pretty heavy day, the tests were not to bad. Very Emotionally drained after it all but happy i am one day closer.

Funny story - not sure of you all got this but i had a blood test that went through the artery. That one made me very nausious, sweating and felt like i was about to pass out but was able to hold it together - just. It was very painful and i have a high tolerance usually (i fell asleep while getting a tattoo on my back once). Didnt help that the Dr missed the first time and had to do it again. I find out later from the nurse that two other patients who had the same test did faint. Haha i felt like that was a win for me.

Well i am still waiting on a date for surgery because they needed to review my case.

Adding another twist to my story..

So, i end up getting a call later around 8pm from my Haemotologist and he was giving me my results for a Von Williebrand disease test i took. He says my results are borderline and to repeat them this morning. He said that it can be acquried due to aortic stenosis. With my risk of bleeding already higher as it will be number 4 sternoctomy i am wondering how this will further impact my surgery.
Simple fix with a simple blood transfusion and platelets?
The longer the stenosis the more severe the VWB disease is?
Anyone know much about this disease?

Now i am waiting on more results.. one day at a time and it will all be fine.
 
20210413_230042.jpg
20210413_230042.jpg
 
Just an update on where i am at since last post.

My haemotologist was questioning if i have Von Williebrand disease and asked for a repeat test. The new results came back last week to confirm that i do have it in a moderate form. He says it is acquired due to my aortic stenosis and how the turbulance of the blood is damaging the VWB factor.

My surgery team has asked me to be admitted into hospital to speak with their haemotology department and discuss what it will mean for my planned surgery as well as have a angiogram.
I am currently admitted waiting to speak to the team this morning.

VWB helps with blood clotting and as mentioned above will require a transfusion prior to surgery to replenish the bodys blood supply..

Glad they picked it up as i was already at higher risk of bleeding due to 4th sternoctomy and i imagine scar tissue is a factor in my surgery.
 
Update...

I was admitted to hospital on tuesday to have a angiogram and consultation with the Haemotology team.

The haemotology team will be looking at 3000 units of biostate prior to surgery and 1500 units post surgery to help manage the Von Williebrand disease. Had a extra few Drs come and visit as i am a interesting case as i may have Heydes Syndrome..

The angiogram went rather well. My right coranary vessels are mild and irregular but no obstructions and the left side is large and has compensation flow.

My right wrisit is still sore but not bleeding. They had to give a fair amount of sedation as my blood vessels were constricting causing lots of pain when feeding in the angiogram wires..

I am home after 3 days and the surgical team have gathered all the info they need and will proceed with surgery on the 11th of May.

I finally have a date!
 
Meanjellybean said:
In case anyone else has the same experience ...

Heyde's Syndrome

Heyde's syndrone - journal article
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ahh the diversity of genetic stuff ... I can't imagine how this could become an advantage, but then as SBS says "the world is an amazing place"


Protective Effect of Sickle Cell Trait Against Malaria
The sickle cell gene is caused by a single amino acid mutation (valine instead of glutamate at the 6th position) in the beta chain of the hemoglobin gene. Inheritance of this mutated gene from both parents leads to sickle cell disease and people with this disease have shorter life expectancy. On the contrary, individuals who are carriers for the sickle cell disease (with one sickle gene and one normal hemoglobin gene, also known as sickle cell trait) have some protective advantage against malaria. As a result, the frequencies of sickle cell carriers are high in malaria-endemic areas.
 
pellicle said:
Make sure you don't let your wife know...
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A date with destiny (not just a hookers name) is always a date to remember ahha

I have taken the lead up off work to be able to have good family time considering i will be out of action briefly.

I was looking at my hospital records while i was waiting for my angiogram (just some light reading). It turns out my last OHS was 25th August 2020. It was a detailed report and very insightful.
 
Meanjellybean said:
A date with destiny (not just a hookers name) is always a date to remember ahha
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indeed :) however my strange mindset is that every day I ride my scooter or motorcycle is a potential date of similar import. I attribute that to how come I've evaded the stats so far...

It was a detailed report and very insightful
Click to expand...

I've never thought to read mine ... may well do one day
 
Meanjellybean said:
Hello All,

Found this community the other day and have been reading many of the stories and advice that has been given regarding cardiac issues.
I want to share my story and where I am at currently.

Brief history:
I have congenital heart disease and was born a twin (identical). The best way to describe it is my brother was the Arnold Schwarzenegger and I - the Dani DeVito. I reside in Australia, live a pretty standard life, wife with two young kids and two dogs. Work full time as a Service manager for disability house and studying to be a Occupational Therapist (3 year).

I have a bicuspid aortic valve (current issue)
My fight for life started early with the following surgeries:
- 6 weeks of age - Coarctation repair of Aorta
- 2 years of age - resection of sub-aortic membrane
- 3 years of age - resection of sub-aortic membrane (redone)
- 3 years of age - laryngeal cleft - repaired
- 4 year of age - fundoplication and PEG feeding tube inserted. removed PEG at 6 years of age.
- 20 years of age - resection of sub-aortic membrane (guy kept coming back!)

Thankfully after removal of the PEG i was able to live a typical life with out any long term medication. I am currently 31 years old and have started to have symptoms daily such as SOB, fatigue, palpitations and then also had the one episode of chest pain and emergency rush to the hospital (1 year ago).

Currently the pressing issues:
- My bicuspid aortic valve has progressed from moderate to severe
- 4.3 m/s peak velocity
- 70 mmHg peak with mean of 40 mmHg
- Valve area 0.8 cm2
- I have left bundle branch block and sinus rhythm (

My cross road options 1:
Surgeon says best option is to have the mechanical heart valve and living on warfarin for life

Benefit: no symptoms any more, able to live typical life and normality.
Cons: living on warfarin and lifestyle changes, heightened risk due to 4 sternotomy, extra risk if there is a need to redo the subaortic membrane if it returns (hope not)

My crossroads option 2:
Another surgeon says he would like to do a valvuloplasty to buy time (typically lasts 3 - 5 years). Keep repeating the valvuloplasty procedure until I am around 50 - 55 years old and by then I would have a tissue valve or similar. Once the tissue valve breaks down I would have a TAVR inserted or small procedures to keep repairing as needed. '

Benefit: no warfarin, no lifestyle changes, less invasive
Cons: may lead to emergency surgery if balloon overstretches and causes perforation or excessive regurgitation. have to keep repeating, may alleviate symptoms periodically, still have to live moderated life once symptoms return.

That's briefly my story. I would like to get any feedback on what living on warfarin is life? Also, anyone had option number 2 presented to them? anyone who had a valvuloplasty and how long it last on a bicuspid aortic valve?
I know I am a complex case and not looking for you to make a decision but would like to hear peoples real life experiences, the good and the bad.

Many thanks in advance
Andy
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Hi Andy! I know we all have our own journeys and excellent reasons for our decisions regarding our individual paths...

But as a very active 32 year old who had a mechanical valve placed last year, I can tell ya WARFARIN isn’t that big of a deal. Sure I watch my step a bit more and am a good degree more cautious around ice, but it hasn’t changed my life much at all.

I also kind of love that I can hear it ticking. It relaxes me knowing my hearts still pump.

Cheers and best of luck with whatever you decide!
 
Heart_Fit said:
Hi Andy! I know we all have our own journeys and excellent reasons for our decisions regarding our individual paths...

But as a very active 32 year old who had a mechanical valve placed last year, I can tell ya WARFARIN isn’t that big of a deal. Sure I watch my step a bit more and am a good degree more cautious around ice, but it hasn’t changed my life much at all.

I also kind of love that I can hear it ticking. It relaxes me knowing my hearts still pump.

Cheers and best of luck with whatever you decide!
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Thanks for the post.
Yes i have decided on the Mechanical valve.
The two decisions are very different journeys each with their own pros and cons. I have made my choice and am at peace with that.

My surgery is on the 11th of May.

What valve did you get? (On-x, Carbomedics?)
Was it your first OHS?
How was your recovery?

Thanks
 
Well the month of May has been a shitty journey for me honestly.
I was cancelled 3 times for my surgery because of the public hospital system. Basically if you are on a waiting list and not in hospital (and can't get health insurance because of a pre-existing condition) you are at the mercy of the system...
Unfortunately I had a heart episode last Thursday which I was taken to the ER and after they reviewed me that said that I cannot go home as it is not safe.. I was saying that all along to them on the phone but unless they see you in a bed and your costing the system money you just get pushed along..
I am planned for surgery in two days, unless a emergency case comes in which I am hoping is not the case..
But I would if been better to have had this surgery weeks ago. Because of the delay I developed a rare blood disease (Aquired Von Willibrand disease- from aortic stenosis) and my heart is very "irritated" and the ecg results are concerning (now on magnesium and metropolol to help settle it down)... I didn't have these issues before and yes I am happy to be given the green light for surgery but it is not fair that I have to crash at home on a waiting list before taken serious..

End of rant - have a good day.
 
That's rough, meanjellybean. I'm glad you're finally scheduled though it's not good you had to have in ER event AND develop a disease to get to the front of the line. Thinking of you and wishing you a safe, effective and smooth surgery tomorrow.
 
Thank you all for well wishes, prayers and hugs.

Quick update:
Been delayed again for surgery. Planned for on Thursday (Sydney time). Reason was that the surgeon wants a paediatric anesthetist because he feels a general one will not be accurate enough with drugs levels considering how long the procedure may take. Not thrilled about it but good to know that he is taking more precautions for things to go well.

Will let you know when I know. Guess a extra few days in hospital for me it is..
 
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